Awards Dinner

A few weeks ago we were invited to attend the Annual Aurora Fireman's Award and Promotions Dinner. The firemen and medic that answered our 911 call were receiving  a commendation and they wanted Jake to present the award. Jake was as excited as I was nervous....I don't know why, but my stomach was in knots all day. As soon as I walked in and looked at the program and saw "Jake's Story", I got all emotional. The speech sharing Jake's story hadn't been shared with us prior to the event so we didn't know what to expect. There were about 300 people in attendance and we sat at a table with the Captain of the crew and his family. (Not sure what the deal is with that strange reflection on my face.)

During the dinner, my Dad was sitting next to the captain and he shared some of the details of that night they came to the house. It's hard to look back and think about how critical Jake was, they honestly didn't expect him to make it. Even this many months later, it's not an easy thing to hear or really even register. I just can't imagine if Jake hadn't survived this. When I look at where he is today, it really is a miracle.

They shared Jake's story and to be honest, I only heard about half of it. I was trying too hard to not sit there blubbering. We went up with Jake (at his request) to present the award. He did such a nice job and we were so proud of him. I still haven't got the official event pictures, but these are what we have.

Oddly enough, the most emotional part of the evening happened afterwards. We got back to the table and I look over at Luke, he had his head down and was crying. I took him out of the room and sat with him and tried to figure out what was going on. The more he talked, the more he broke down. Hearing them talk about the 911 call and the bad shape Jake was in, was just too much for him. It took him back to that day when our household was in complete chaos, fireman were coming in, and the next thing he sees is Jake coming out on a stretcher. He had initially been in the house when we made the phone call, but went outside with our neighbor because he didn't want to see Jake throw up. He said he was just saying to himself "Please let my brother be ok." It broke my heart to think of him standing outside, scared and not knowing what was happening. He also told me he would give away everything he had just to have Jake back the way he was before and not have him going through all this. In a strange way, it was probably good for him to get all the emotion out. I just hate that as a 9 year old, he's had this much to deal with.

We were really honored to be invited to the ceremony and given the opportunity to publicly thank and recognize the crew in front of their peers. They will always have a very special place in our hearts.

Snowboarding or not...

As some of you may have seen on my Facebook page, we went up to Winter Park on Thursday to take a family lesson through the adaptive ski program. Going skiing/snowboarding as a family is something we've really enjoyed the past few winters and is something we wanted to figure out a way to get back to.  Winter Park has an amazing disabled skier/snowboarder program as well as offering a family lesson, so it seemed like the perfect fit. It wasn't just about getting Jake back on his snowboard, but doing it as a family. We didn't want to go up and put Jake in his own lesson and have the rest of us go ski together.

I had very high hopes for our afternoon lesson and envisioned the four of us and an instructor going up on the mountain together and her assisting Jake on an adapted snowboard. I'd seen pictures of the adapted snowboards...they had a metal bar that looks like an upside down square U, so the instructor would face Jake and do all the carving and turning for him. We thought the snowboarding would be perfect with his left ankle issues since his feet are stationary on the board. I had talked to his PT's and they agreed to give him a one day break in-between his casts so we could go. Things didn't go quite as planned...

Long story short, snowboarding was a complete bust and Jake ended up in tears. He was given a regular board, not an adaptive board and his left leg just isn't strong enough yet. In retrospect, trying to go right after he got a cast off wasn't one of my better decisions. But they were off from school, the weather was perfect and we thought getting him back on the mountain would be really good for him. He's also mentioned several times this winter he feels bad that he's keeping the family from skiing this year and I wanted to take that off his plate.

I have to give props to his instructor for coming up with an alternative. She got Jake a ski bike which is a bike frame and uses small skis instead of pedals. We were so proud of Jake for being willing to try it after such a huge disappointment with the snowboard. I was feeling awful for rushing him to get back on his snowboard and causing him yet another letdown. He was a little hesitant at first but ended up doing really well. He never got off the magic carpet/bunny hill (for those non-skiers it's the area for brand new skiers), but  he seemed like he was having fun. Here is some video we took http://youtu.be/-OTd826ccCQ. Luke was also a real trooper, we were so proud of him. He was so patient and just kept making short little runs in the learning area. He and Todd did go make one run on the chairlift towards the end of the day. Luke also gave the ski bike a try and was surprised at how hard it was.

While Jake was still bummed he didn't get to snowboard, he ended up having a decent time and the day ended up being salvaged. His instructor said that he has enough control on the bike and we could take it up on the mountain next time.

We were invited to be part of something else really cool this past week that I wanted to share but I'm waiting for the pictures, so that will have to wait until next week. :-)

Week 2 of the Cast

Jake survived his first week of casting and actually did pretty well. He was even able to have his horse therapy last Monday while wearing the cast. He got a new cast on Friday, this time in red. His PT measured the range of motion in his ankle and it had definitely increased from last week. She told me the numbers, but I didn't write it down, so I can't remember what she said. I'm hopeless anymore if I don't write things down. :-) I'll be sure to take notes this week.

Unfortunately, he's having a much harder time getting around with his new cast. I think the increased stretch combined with a thicker, heavier cast is the cause. He's still able to walk, but it's what we call his wedding march walk. Left foot forward, bring the right one up to match it. It's tough to watch because it seems so labored, but we're just glad he can still get around independently. We're still very hopeful this will help him in the long run, so we'll just be sure to limit outings that require more walking this week.

Jake got another PA (post-aneurysm) first this weekend and had a friend come spend the night. The boys have some really good friends who are brothers and the same age as our boys. Luke was over at their house for a birthday party sleepover so Jake had the older brother come to our house. Missing out on some of these normal kid things has been really tough on Jake. Up until this past month, he was pretty wiped by 8 pm (which isn't too conducive to sleepovers) and going to someone else's house has not really been an option with the extra assistance Jake needs with his leg brace. He was so excited to have his friend over and they had a good time. I have to be honest, I was much happier to have those two here vs. the five nine year-olds at the other house. It was MUCH quieter! 

Serial Casting

We had a pretty good week. The boys were off school for President's Day on Monday and Tuesday so they only had a short week at school. As usual, Jake had several therapy appointments this week and we made a decision on Wednesday to try a new treatment for him. We've been talking about some different options to try and help his gait. Even with the botox, his foot is still rolling to the outside edge when he walks and his knee is turning outward. His PT and the orthodic specialist recommended we try serial casting which will stretch his heal cord and increase the range of motion in his ankle. This will also help his foot fit better in the new brace he'll be getting after the casting treatments. He was fit for the brace he has now while he was still in the hospital and his ankle muscles haven't come back as quickly as they thought they would, so it's really not working the way it was intended.

He got the first cast on Friday. What they did was hold his foot in what would be a fairly neutral position for most of us, cast it and he'll wear it for a week. Each week for 3-4 weeks, they'll bring the foot up a little higher stretching the heel cord a little bit more and put on a new cast. We were really worried about how it would affect his mobility, but he's doing great. He gets a little off balance due to the weight of the cast, but he's able to walk and get around just fine. Funny enough, his biggest worry about the whole thing was having to wear athletic/sweat pants to school since he's definitely a jeans kid. He is quite excited that he gets a break from PT and home PT for the next few weeks since there isn't too much we can do with his cast on. As always, he's being quite the trooper.

More Climbing

What a beautiful Sunday! We took the boys rock climbing this morning for some fun OT/PT then went to check out the new Trader Joe's (first in Colorado!) I knew better then to go at 11am on a Sunday, let alone on opening weekend, but went anyway. To say it was nuts is an understatement. I can't wait to go back when I can really check things out. When we got home, we had to take advantage of a 64 degree day in February and took a long walk. Todd had the dog so I took Jake in his chair and got quite a nice workout in too. For being as skinny as he is, he's quite heavy when being pushed uphill!

We are still having a tough time keeping Jake motivated to do his exercises. He is at a point he can't see the progress he's making, even though it's still happening. In the hospital, he would often improve between his morning and afternoon sessions. Now progress is measured more in weeks instead of days. Some things like his walking seem to be on a sliding scale...better some days, worse others. When he went rock climbing today, he got a lot higher than he did last time, at one point getting above where Todd could hold on to help him. A lot of it was coming from his leg strength, but we noticed his left hand grip wasn't quite as strong. His stamina is clearly improving though. We took Todd's truck today and didn't think to get his wheelchair (which stays in my car) and he walked all over two grocery stores and Kohl's, all after rock climbing for an hour. There is no way he could have walked that much even a month ago.

Going through all we have during the past eight months has given me a new found respect for those parents who have been dealing with some type of developmental issue since birth. I never imagined the incredible amount of time and energy it takes scheduling appointments, going to appointments/therapies, doing research, all the periodic testing, dealing with the school...it's become a full time job itself. On top of that, you have all the things at home that now take more time - exercises, homework, stretching, getting out the door, getting dressed, etc. It's a constantly changing game plan for all of us. In many ways we've had to really slow down and yet we have so much more to do. Somehow it all just gets done or it doesn't and that's ok too. I'm not complaining, you willingly do what you need to do for your kids, but it's just been very eye-opening.

Jake Becomes a Boy Scout

The highlight for Jake this week came on Saturday.  Jake joined cub scouts in first grade and

another mom and I became his den leaders. We've had a great group of boys we've been working with over the past five years as they've worked their way up the ranks. Their cub scout journey ended on Saturday when they became boy scouts.

When Jake ended up in hospital, we weren't sure if he was going to be able to finish what needed to be done to earn his Arrow of Light. (Arrow of Light is an honor that can be earned as a Webelow II by completing a set of requirements.) He had a handful of things planned to complete over the summer which obviously wasn't able to happen. The boys can become boy scouts without earning the Arrow of Light, but it's what he's been working towards the past year and a half. And, come on, you get an arrow! In January, he finished the last of his requirements and was so excited. When we were going through his book, he realized how little he had left to do to also earn the Super Achiever which is completing all 20 activity pins (you only need 8 of the 20 for Arrow of Light). He decided he wanted to do that too and was able to get everything finished.

On Saturday, we had our Blue and Gold banquet. It's a really cool ceremony for the boys and their families, Jake was grinning ear to ear all night. We have dinner, a cake contest (the "pizza" in the bottom right was our submission this year) and the ceremony itself. There is a story teller who talks about the boys journey as a new tiger scout working towards becoming an eagle scout. He's very entertaining and even lights a scarf on fire. The boys who earned their Super Achiever Award are recognized and then the Arrow of Light is awarded. (It was pretty cool when the storyteller selected Luke to help him distribute the arrows, he took his job very seriously.)  The boys thank their leaders, then crossover a bridge with their parents and are welcomed by the boy scout troop they are joining. I tried really hard to keep it together but finally just gave in to the tears. I was so proud to see Jake up on the stage receiving not only his Arrow but also his Super Achiever. Scouts has been such a big part of our life for the past five years and it was the first group of kids he saw once he got out of the hospital. He went to a scout meeting even before he went back to school. Our scout family has been so incredibly supportive of Jake and the rest of us...I'm really going to miss them. Luke still has two more years, but all the older boys are now moving on.

Jake was pretty wiped out by the end of the night, but also really happy which was great to see.

P.S. If you want to see the pictures bigger, you can do so here https://plus.google.com/photos/113131787883990698606/albums/5978617672967725745?authkey=COCv1YbHrJzh9AE

Botox - Round 2

For those of us Bronco fans, tough game to watch...very disappointing way to end the season. However, we got to spend the game with family, share the excitement of the home team being in the Super Bowl and ate some good food. At the end of the day, that is what's important. Not minimizing the difficult loss, we just have a different perspective now. Who I really feel for is the players....I personally would hate to have one of my less than stellar moments (which I've had many!) visible in front of millions of people, then have to stand up and talk about it to reporters. No thanks. 

So back to Jake...his walking seems to have declined a little bit again. My personal theory is the botox has kicked in and he needs to relearn his gait with more relaxed leg muscles. He's been so used to walking with tight muscles the past month that he now needs some time to recalibrate. The good thing is, his PT and stretch therapist both said he was more flexible and not nearly as tight which is what we are working towards. His left foot is also far less "floppy" and isn't pointing down as much which is also really good. Now when he had his brace off, he can set it almost flat which is huge progress. We are very hopeful to see how things go the next couple of months with his therapy.